Streams of Misery

"The Lord is close to the brokenhearted and saves those who are crushed in spirit." - Psalm 34:18

Ataxia is a rare neurological disease that affects your ability to walk, ability to talk, ability to move, and more. It is progressive, and there is no cure. The only thing you can do is live with it and try your best to slow down its progression. Initially, we had no idea what was going on with my mother. Over time, doctors ruled out things like multiple sclerosis, Parkinsons', and even cancer. It wasn’t until 5-6 years into the progression of her disease that a neurologist finally diagnosed her with ataxia. But even then neurologists did not know how to treat her disease. We moved from one doctor to the next and tried one treatment to the next, but nothing helped. 

When my wife was pregnant with our daughter, I had to make a hard choice: leave our parents and raise our daughter in our own space. I struggled with the decision. My biggest fear was always that if I left the house, something worse would happen to her. 

On the other hand, there was a lot of stress and unspoken conflict in the house. The stress would not be good for my wife’s pregnancy. Despite these thoughts running through my mind  I came to my decision: time to start house hunting.

"So do not fear, for I am with you; do not be dismayed, for I am your God. I will strengthen you and help you; I will uphold you with my righteous right hand.” - Isaiah 41:10 - 

Fast forward to November 6th, 2021. My daughter is born at 27 weeks. The closing date for our co-op is on the 9th. My wife is released from the hospital on the 8th. The day after we close, my mother-in-law came to the U.S. from India. That one week felt like a month: a combination of joy and absolute terror all wrapped into one surprise package.

We would spend the next few weeks between going to the NICU and moving into our new place. I decided to take paternity leave after my daughter was released from the hospital, so I was working regular hours during this time. Every day felt like I was hanging on a thread. There was always some crisis to react to. One night the doctor called us because my daughter had a collapsed lung. Another time her septum broke. She was only 1 pound, 10 ounces, and hooked up to all these machines monitoring her every breath. It was hard to watch, and even harder to fathom. I couldn’t get my mind around it. I felt so helpless, so lost. There was nothing I could do but sit and wait and pray. 

My faith was the only thing that kept me going. I was reading the book of Job at the time. What an odd book to read at a time of crisis, but it showed me that the worst question I could ask at the time was “Why are you doing this to us, God?” Because God saved my daughter, and he would certainly bring her home to us. There was no doubt in my mind about this. It was the waiting that was hard. 

Calling up the NICU and asking for a status report on my daughter felt surreal. I had to learn fast to be a father,  in a way that was probably foreign to most people. As I looked around the NICU, I saw many parents struggling, and many babies in similar conditions. This wasn’t normal, but this was my normal.

A few weeks after we completely moved into the new place, my parents and my sister came to visit us. It was like a housewarming, and my mom was very happy. She loved the new place. She couldn’t speak because of her condition, but she was smiling ear to ear. It was a very happy memory, and I’m glad we captured it in pictures. 

My parents were happy about the new place, and slowly my daughter was gaining weight. The doctors were trying to get her off breathing support. There were things to smile about, but my mind refused to smile. To me, life was like streams of misery with pockets of happiness. I found it difficult to completely settle into a moment of happiness. Because the moment I closed my eyes, something else came down the stream.